Tag Archives: diabetes

Then this happens …. 

My mum had been looking after Arlo for us whilst we partied like it was 1999 two hours away in London. All was ok the night went without a hitch and for a short period of time type 1 diabetes wasn’t the only thought in my head, I felt relaxed and was having a great time. I fell into the door in a drunkern stupor around 3am a happy drunk . 

A couple of hours later I woke feeling the pains, aches and cringes from the night before. Chris was on his way to work and my mum was still here. The sky was blue the sun was shining but my head was a big black grey cloud. 

I suggested to my mum that she take Arlo home with her and we could try a sleepover. Arlo was desperate to go he loved going to nannys and since September had not been able to have sleepovers. Mum was more then capable of managing and we needed to try it at some point so why not now I thought. 

I changed the cannula packed his bag and bombarded mum with enough information both our heads were going to explode. Off they went. 

I spent the day lying on the sofa the pressure was off I didn’t have to think about diabetes, didn’t have to count carbs and manage a pump  for a day.  Regular updates from mum I knew his levels were creeping up. I put this down to excitement at being at Nannys . 

5pm came and I still not moved from the sofa had managed to watch two movies and the new episode of Line of Duty I was feeling suitably relaxed. Chris was home from work, the plan was to get takeaway  and watch a movie. 

Then mum called, “Arlo’s levels are 25.6 with ketones at 0.6!!” Ok I thought not a problem we can do this . Lots of water and check in one hour. I looked at Chris who was looking at me with a panicked look on his face saying “this is why we quit London ! We are two hours away from him !!” 

An hour later and his levels had not changed. Mum was going to have to change his cannula and give him some insulin via the pen. Having never done it before and seeing Arlo on FaceTime jumping around and acting hyper I knew this wasn’t going to be easy. So one very fraught FaceTime conversation later with our diabetic nurse on the other phone I  talked mum through a cannula change. The new one was in and the old one  removed clearly bent  at tip. For eight hours or so Arlo had not been getting any insulin. 

Having seen the bent cannula tip for myself I felt slightly relieved that the problem had been solved,  now our main concern was Arlo crashing so low because of the amount of insulin he had. Trying not to frighten Arlo or mum we calmly said check in an hour. Away from FaceTime Chris was pacing the room  and I was mentally getting myself awake and alert ready to drive to Milton Keynes to be with Arlo.  

Hour later mum rang “Victoria he is now 29.9, I’m bringing him home.” 
Coming to a compromise we arranged to meet in the middle at Arlo’s God mothers and then stay at my sisters. It took an hour to get there. Having spoken to Lorraine our Diabetic nurse enroute I had a plan In place. 

Arriving to a traumatised mum who kept saying “it’s all my fault I’m sorry ” and a hyper six year old.  We got to work. Another two units by a pen and another cannula change ( the third today) we could see that the cannula had yet again kinked at the tip. 

By now it was 10pm. I was blaming myself for taking the eye off the ball and allowing myself a day off to have a hangover and to not think of diabetes. I felt awful, mum felt traumatised and Arlo had gone through three cannula and two injections today. 

It was nobody’s fault though. I realised that I can never take a break from diabetes and Arlo can never have a day off. Type 1 diabetes is here for life and it doesn’t switch off when you need a break no matter how tired or hungover you are. Arlo can never switch off from diabetes and try as we might to ensure that Arlo does everything he used to before type 1 came along, sometimes the truth is there may be things such as sleepovers at nannys, parties where we leave him, play dates at Friends houses where we may have to wait a little longer. 

Type 1 diabetes sucks and it’s not going away we are just going to have to learn to live with it and hope that when Arlo is old enough he will understand why sometimes things just didn’t work out as we wanted them to. 

 

A tale of two Beavers. 

 Arlo was set to start Beavers the week he was diagnosed. We put it off until we felt he was ready. Chris and I were never going to be ready but for Arlo to have as normal life as possible we had to get on with it.

So four weeks after diagnosis we decided to get back into normality and take Arlo to his first Beavers session. I emailed the leader to let them know we would be coming the following Monday and that I would be staying.

Beavers day came, Arlo was so excited about starting. Some  of his buddies from school would there, this was a big deal and a massive step forward for us.

We arrived and saw everyone running around settling in.  Pre – diabetes it would have been at this point that I would have pointed Arlo In the direction of his school mates, given him a kiss, said see you later and watch him as he happily wondered off with his buddies.

This time it was completely different. We didn’t leave each other sides and clung onto to each other’s hands. I walked us towards the Leader and introduced ourselves. I wasn’t expecting a fanfare but I was expecting some reassurance and some kind of signal that the responsible adults looking after my son were interested in his condition and realised how serious it was. The first conversation went a bit like this :

Me : “Hi hello this is Arlo and I’m his mum, I spoke to you about Arlo and emailed to say I would be staying”

Leader : ” oh really ! Why would you be staying, we encourage the beavers to be independent here and you being here doesn’t fit in with that.”

Me : ” Arlo has just been diagnosed with type 1 diabetes I need to be here.”

Leader :” So do you do the same at school and go to school with him every day ?”

Me : ” No the teachers have all had training sessions until they are competent in managing his diabetes.”

Leader : ” Well I’m not sure we can accommodate this you will have to speak to the Beaver/Scout commissioner who just so happens to be coming along later , you can stay until then.”

I’m not going to lie at this point I wanted to scream at her “fuck you and your Beavers we are out of here !!” I looked at Arlo who fortunately had gone over to sit with his buddies I took a deep breathe and calmly sat down it was only for an hour I told myself.

My actions and how I reacted would have a massive affect on Arlo and how he dealt with his diabetes in the future. If he saw me get angry every time someone was rude or discriminative he would then think it would be ok for him to do same.
As I sat there desperately trying not to cry I noticed that they were going to be cooking. My palms started getting sweaty and I could feel my heart fluttering in a panicked way. I had not anticipated cooking and eating food.

Me to leader : “Are you cooking?”

Leader : ” Yes we are baking bread- is that a problem ?”

Me : ” It is if you don’t inform me ! Will they be eating the bread ?”

Leader ( sighing at me now !) ” Yes but we we won’t give Arlo his to eat.”

Me  (Trying not to lose my temper ): ” No Arlo will do whatever everyone else is doing – he will not be left out and his bread will not be put to one side you need to let me know and I will ensure he has insulin to cover the bread.”

By now the conversations between us were becoming quite strained.

It will be ok once the commissioner arrived I told myself. How wrong was I ! The commissioner was worse than the leader making me feel even worse than I already did. The conversation was all a bit of a blur but I recall hearing statements such as:

” Oh my husband is a diabetic and he is fine.”

“To have you here involves a lot of paperwork for me to complete, you know it’s a lot of work and you would have to come in for an interview and complete lots of paperwork its time consuming.  If we can’t work something out then we may have to consider weather this is suitable for Arlo!”

It was at this point that I started to lose my calmness and reminded the commissioner that this was discrimination of the highest level and my son is entitled to come here like everyone else !

It all went a bit weird after this , the conversation ended and we went our separate ways . Me wanting to never come back again but knowing I had to hang on for Arlo.

The last straw for me was when the leader grabbed my arm and said

” Its ok I used to be a teacher and I’ve done first aid.”

I replied with “Oh have you looked after children with type 1 diabetes? ”

“No I’ve not come across anyone with diabetes.”

At this point I decided that was it  we were never coming  back. I was horrified at the lack of understanding, the lack of empathy and the total lack of reassurance. I was surprised that a huge organisation such as Beavers and Scouts didn’t have processes in place in managing chronic / long term health needs in children. We cant have been the first child to come to Beavers with health needs.

When I got home I burst into tears and vowed to not let this beat us. Arlo loved it and he wanted to go back so I penned a long detailed email citing that our conversations may have been misunderstood and that myself and Mrs L would be willing to deliver some training much like the school at a convinient time for both the leaders before the next session. I never received a reply from my email. One week later we all received an email from the leader. I expected a reply to my email would be coming my way as the next session was a day away. I waited 24 hrs and received nothing. I then sent a second email stating that Arlo would no longer be attending Beavers and that this was not going to work out. Within the hour I received a reply!

” Thankyou for your email and letting us know, that’s a shame. All the best.”

I was so angry I was raging , it makes me angry writing this and reminding myself of this time.  I couldn’t believe it how dare they !

I should have taken it further and now I wished I had but at the time I wanted to forget about it all and so we did.

Penny came to the rescue giving me details of Beavers club in a village near us that she was familiar with. It could not have been more different.

A telephone conversation with the regional organiser followed by lots of email contact and a home visit by the Beaver leader . Reassured all the way that we would be working together. A request that when the beavers were doing cooking that we could be there to support them. It was such a different scenario and so much more positive.

Arlo has now been attending Beavers for the past month. He loves it, we love it. We don’t stay we do a blood glucose level the leader asks us what it is and how Arlo is. If all ok we leave Arlo to enjoy Beavers just like everyone else there. Just like it should be.